Autism Acceptance Month – During a Pandemic

Samantha Connor

IT’S perhaps the first time in
many years our social media feeds haven’t been filled with ‘awareness’ posts
and jigsaw puzzle pieces during April. It’s a shame it took a pandemic to make
that happen.

Indeed, noting the existence
of autistic people has been a low priority across the world. That’s for a very
good reason – COVID-19.

However, there’s a problem
with this. Autistic people, who make up about 95,500 of all 338,982
participants, are by far the largest diagnostic group receiving funding via the
National Disability Insurance Scheme. And they are reporting significant issues
around a range of life areas due to the pandemic – now is a time for increased
awareness around issues for autistic people, not less.

We hear these issues every
day. Many families have multiple autistic members in their families – schooling
is often a specialist area, with time and patience devoted to teaching in a
classroom environment with support staff, education assistants and teaching
staff. In addition, many parents of autistic children are also autistic.

Poverty is also a factor –
more than half of all disabled people live below the poverty line. For families
with multiple children, that means fewer resources at home, including computers
and iPads. Inclusive education means reasonable adjustment, a modified
curriculum and specialised instruction – few non-home-schooling parents are
equipped with the skills to adequately educate multiple autistic children.

Disability service agencies
continue to close their doors against the threat of infection, or withdraw
staff as they fall unwell. For autistic adults living at home, this means that
support is predominantly left to informal carers, who are often aging and at
high risk for COVID-19.

Reliance on community paid
supports means an inability to self-isolate, putting autistic people and carers
with co-occurring disabilities at increased risk of community transmission. At
the time of writing, disability support workers do not have routine access to
PPE – nor are they eligible for testing in the same way that aged care and
health workers are.

In group homes and congregate
settings, autistic adults are clustered together with other disabled people. Many
Australian Disability Enterprises (ADEs) remain open as ‘essential workplaces’
– even when the work involves packaging Qantas headphones for a few dollars an
hour.

Late last week, a Western
Australian ADE who employ 450 disabled staff members announced that a disabled
employee had tested positive to COVID-19. The worker had contracted the virus
through contact with a bus driver on the way to work. Within a few days, the
workshop reopened.

Another disability service
provider, Interchange, announced that a disability support worker had
contracted the virus. It follows an announcement that an allied health
professional in WA had fallen ill, as well as two disability support workers in
Auckland and Wellington, NZ.

One of the biggest challenges
for autistic people is not inherent vulnerability, it is marginalisation. The
Ruby Princess is in the news because it is a congregate setting – people who
were aboard cruise ships are dying every day. Living in a group home, working
in an ADE or being forced to attend a day program with many others increases
both transmission and infection risks many times over. In the USA, 89 staff and
residents in a Supported Living Centre tested positive to the virus.

Evidence before the Disability
Royal Commission late last year raised significant issues for people with
cognitive disabilities in the health care system, including preventable deaths.
The Disability Royal Commission raised concerns about access to health without
discrimination – for autistic people, who face significant barriers to both
health and mental health, there are serious concerns. They included the need
for a rapid response from government and the NDIA to ensure adequate support
for people who cannot effectively self-isolate or adhere to social distancing
laws.

And yet even in a crisis as
overwhelmingly as the coronavirus COVID-19 pandemic, there is a bright side.
Many autistic people have found themselves surprisingly well equipped to deal
with social isolation – for many of us, this is part of our lives.

There are flexible employment
measures being rapidly introduced, like increasing use of technology and work
from home arrangements, something advocates have been lobbying for a long time.

Awareness is being raised
about inequities like the failure of government to raise the DSP and Parenting
Payment, as well as difficulties autistic people may have with sourcing
specialist food. Few of us are mourning rules around physical contact with
other people.

Perhaps the pandemic will help us be included in ways we haven’t ever been before, if our voices aren’t lost in all the rest of the noise.